LGLL Guru

Apparently, the national LGLL guru is Dr. Thomas P. Loughran, who performs extensive research on the malady at the University of Virginia Medical School. He is listed as a physician-scientist on the UVa Cancer Center's website and gets partial funding from the National Institutes of Health for his research. There's a link to the UVa LGLL website under the LGLL Links heading to the right of my posts. He looks like a pretty cool guy and I'll bet he and Dr. Ellis could have a heady discussion about LGLL and hematology in general. I wouldn't want to be the medical stenographer during that conversation.

UVa is in Charlottesville, VA, about 3 1/2 hours from Winston-Salem, not a huge distance to travel if I ever decide I want my large granular lymphocytes to visit the guru. I'm sure he's got lots of people knocking on his door and awaiting entry into the clinical trials that he administers; probably from all over the country if not the world.

The UVa Cancer Center also has a LGLL registry for anyone who has been diagnosed with LGLL and simply wants to contribute to the body of knowledge about this disease. I sent an email inquiry to the registry administrator asking if my specimens and reports were worthy of the guru's attention. I got a nice email back from Holly Davis saying that they would absolutely welcome my participation in the study. Included in the email from Holly were several forms that I and my local doc would need to complete to officially register with the program. I responded to Holly telling her that I would look over the forms and get back with her.

After reviewing the LGLL Registry consent and medical history forms I emailed Holly back and asked her to call me so I could ask some questions. She promptly returned my call that same afternoon. I'm really disappointed that there's not a picture of Holly on the UVa website so that I can post it here too. That's an oversight that sorely needs attention. If I ever visit the LGLL guru in Charlottesville, I'll get my picture taken with her and post it.

Holly was a veritable fount of wisdom about the registry program. It seems that the worst that could happen is my DNA gets swiped by some dastardly third party who may then, in a 1 in a gazillion chance, link it to my name. Horrors!! Hell, I'd much rather deal with that unlikely event than all the banks sending me crap in the mail nearly every freakin' day! In fact, it might be refreshing to have some really weird mail come that was somehow traced back to the my DNA. It's a brave new world out there!

Getting back to my conversation with Holly, (Is she a doc? Should I be calling her Dr. Holly, or Doctor Davis? Another piece of information to get if I go up there.) she told me that I could be a part of the registry and could also become a patient of the LGLL guru himself if I chose. Now that sounds like a great third option! I mean, who wouldn't want to be under the care of the person who practically discovered and named the disease? There has to be huge bonus points for that but where does one redeem them?

"Excuse me St. Peter but I have 25 thousand un-redeemed LGLL points from the LGLL guru himself. Can I get an upgrade on my eternal accommodations? I'd like a flat on a street of gold overlooking the garden of Eden."

So now I have three options for the 'wait and see' phase of my LGLL odyssey which includes periodic blood draws followed by CBC tests and doctor visits.

1) Dr. Paschold at Novant
2) Dr. Ellis at Wake Forest Baptist Health
3) Dr. Loughran at UVa Medical Center

I feel like the wait and see period would be a waste of time for Dr. Loughran. He's got his nose to the grindstone and doesn't need to see my boring lymphocytes until I become symptomatic. Then, he's the big gun held in reserve loaded with clinical trials and all kinds of arcane, yet to be FDA-approved treatment options. If I can get my blood drawn at the local Lewisville Family Practice of WFBH but do my semi-annual or periodic visits with Dr. Ellis, that has some merit. Or, if I want to continue to enjoy great company under warm, inviting conditions with Novant's blood cancer emperor, I could stay on the schedule with Dr. Paschold for quarterly blood draws and semi-annual visits. Mari Jo is of the opinion that I should visit UVa to have an initial meeting with Dr. Loughran to establish a relationship with him and the program.

Each option has advantages and discussing them will provide great dinner conversation. Regardless of which option we choose I think joining the LGLL registry at UVa is a no-brainer. Why not help increase the body of knowledge about this disease? Even though the information may not help me, it may help some poor schmuck later on down the road. If it does, I'll take my accolades posthumously and with great humility as I chill with my dad, Ghandi, Jesus, Mohammed, Martin Luther King, Mother Theresa, Krishna, the Buddha and Linda Ronstadt while sipping on a top-shelf nectar of the gods.

Saturday, July 25, 2015

Sometime during the morning mom decided she wanted to ride down to Teachey, the small, rural, Duplin County town where she and my dad grew up. Some family on her side still live in the area, not so many on my dad's side; they got the hell out of Dodge, or Rockfish in their case, the township in which they lived. There used to be a lot more of my mom's family living there but most have moved on - to a more sublime afterlife or away from the dusty dirt roads that once defined the town. To call Teachey a town is really a stretch, it's more like a crossroads with a railroad track through the middle of it. It's close to Wallace, NC if that helps. If you're having problems falling asleep, do a street level drive through Teachey using Google Maps. It's better than Ambien and a hell of a lot cheaper. To facilitate  your slumber, here's a link to follow.

https://www.google.com/maps/@34.781245,-78.006902,3a,75y,247.49h,75t/data=!3m6!1e1!3m4!1sYSFeDR3wzTIoRFXUPc5wtQ!2e0!7i13312!8i6656!6m1!1e1?hl=en

This is a good time to point out that Teachey is supposedly named for Edward Teach, aka Blackbeard, the famous pirate who presumably frequented the North Carolina coast. But what would Blackbeard be doing 45 miles inland? I'm not sure if the Northeast Cape Fear River was navigable in those days but it would have provided Blackbeard with a watery pathway to the area. Maybe he was burying some booty or looking for buried booty? (Double meaning warning for post-Boomers!) To date we haven't discovered any buried booty, of either type.

Mom, Mari Jo and I drove to Teachey using the 'back' roads, NC 111 and 11, through towns like Kenansville and Charity, the former a veritable bustling hub of commerce compared to Teachey. The back roads are far more scenic if you're into rural landscapes. The other route is faster but more scenically sterile, US 117 and I-40. As we approached the area where she grew up, my mom pointed out the house where her maternal grandmother, 'Big Mama' Rouse, lived back in the early 1900's. It's a smallish house with an inviting front porch and a large front yard neatly framed with a white picket fence near the road. (Photo credit: my lovely wife, Mari Jo.)

Once we arrived in Teachey, our first stop was the cemetery where my dad and many relatives on my mom's side of the family are buried. I'm not sure what prompted this side trip but it very well may have been the conversation about mortality the night before. The visit to the cemetery was emotionally uneventful but nevertheless poignant. It's been 5+ years since my dad passed and I still miss him like crazy at times. You're still my hero dad and I love you to the moon and back! You're the first person I want to see in the afterlife, if there is one.

Just a quarter mile from the cemetery is the house where my grandmother and grandfather lived when I was a kid. We stopped in front of it to snap a photo. What memories I have of that house and the huge farm that surrounded it. I'll save that story for another post. (Photo credit: MJ)

While in the Teachey metropolitan area we decided to visit some of my relatives living in the suburbs. The traffic was a bitch! First visit was to see my aunt Mary Vann, my mom's sister-in-law who was married to mom's brother, Rufus Casper Jenkins. He was called R.C. most of his life, for obvious reasons. If I was given the choice of going by either Rufus or Casper, I think I would seek out some terminal illness in order to limit my suffering with such a moniker!

Then we drove all the way across town through horrendous traffic yet again. This time we visited with my cousin Winifred, my mom's niece, who is the daughter of her other brother, Elmore Royal Jenkins, who went by the nickname of 'Buck', again for obvious reasons. My mom's father was Elmore so Buck was a junior.

At this point most readers are probably thinking what the hell is it with the names of my mom's siblings? Were the names chosen just to make them grow up tough, like a boy named Sue? My mom's name is Elsie Lorea, also not one of the most common names around. My grandfather and grandmother weren't on drugs when their children were born, of that I am absolutely sure. These have to be family names that they wanted to keep within the family for as long as possible. Unfortunately, for them, but fortunately for the grandchildren, that trend ended with my mom and her two brothers. My cousins' names are Bobby, Winifred, Danny and Donald. My brother's name is Joseph and none of those names are as catchy or macho-inducing as Elmore Royal and Rufus Casper. Alas, the family tradition may have come to an abrupt halt but the family lives on anyway. Isn't that more important?

We returned to Goldsboro using the more sterile route; I like mixing things up. After a rather late but delicious dinner of grilled T-bone steak, charred sweet potato slices and corn-on-the-cob, we followed this gastronomical tango with a slow-dance of hand-cranked, home-made peach ice-cream. (Was there a misuse of hyphens somewhere in that last sentence?) Exhausted by our afternoon adventures in the land of Blackbeard and sated by our evening meal, we languorously beckoned the night and embraced its sweet promise of dreamy repose in the house that I grew up in lo so many years ago.

Friday, July 24, 2015

I took the entire day off from work today to run some errands then drive down to mom's. This was the day to break the news to her and I was a bowl of jell-o internally. Was this the right thing to do?

Yes, she deserves to know in case life suddenly goes off the rails.

No, I will probably outlive her even if LGLL does the dirty deed so why bother her with this crappy news.

Yes, the kids and my brother already know so the likelihood of her finding out through someone else is pretty high.

No, my dad kept a similar secret from her so I have a stellar role model for withholding this info.

Yes, my dad was actively treated for his condition which reduced chances of his early demise.

No, even if things turn crappy tomorrow, why should I worry her for one extra day.

Yes, no, yes, no. Why not just flip a freakin' coin and let random chance be the determinant. I know that my ambivalence is due to nervousness not because it's not the right thing to do. Mari Jo and I both agreed it was appropriate and Joe supported the decision mostly because we all wanted her to hear it straight from us and not from another source with no one there to support her.

Mom took the news in rather stoic fashion. Yup, that's where my brother gets it from. God bless 'em both for being able to assimilate shitty personal news and continue to function. We all need a dose of that so we don't fall apart in case there's no one else to pick up the pieces.

After we delivered the news she was kind of quiet for a spell then asked a couple of questions - good questions. She asked if I would get my treatments from Dr. P. or Dr. E., Novant or WFBH. I told MJ and I were discussing that issue but we are probably a very long way out from having to make such a decision. Tomorrow, that mystical land where 99.9% of human intention resides.

Here is one of my favorite poems when I want to purposefully get depressed, er, I mean, when I'm in an introspective mood. It's an in-your-face atheistic apologia and powerful as hell. If you're easily led down a melancholy path then be forewarned.

Hap

BY THOMAS HARDY

If but some vengeful god would call to me

From up the sky, and laugh: “Thou suffering thing,

Know that thy sorrow is my ecstasy,

That thy love's loss is my hate's profiting!” 

Then would I bear it, clench myself, and die,

Steeled by the sense of ire unmerited;

Half-eased in that a Powerfuller than I

Had willed and meted me the tears I shed.

But not so.   How arrives it joy lies slain,

And why unblooms the best hope ever sown?

—Crass Casualty obstructs the sun and rain,

And dicing Time for gladness casts a moan. . . .

These purblind Doomsters had as readily strown

Blisses about my pilgrimage as pain.

Wednesday, July 22, 2015

I Woke up this morning feeling much recovered from some of my lost sleep. Yay!! MJ and I went over the LGLL questions together, cutting and pasting from two separate documents until we were satisfied that we had all of my original questions and her add-ons included. I printed them out and brought them to work with me so I could take them to the doc.

I told MJ not to expect this doc to have answers to all the questions. I know WFBH has a cool new cancer center, but I don’t think anyone there specializes in this rare form of leukemia. So, I asked her to temper her expectations for now and be aware that her anger and pain over this diagnosis may be driving her obsessive inquisitiveness. (Those aren’t the exact words I used, but you get the point.)

On my way in to work I decided to dedicate the day to learning as much as possible about LGLL to help answer some of the questions myself. So, here I am at work pouring over online documents and attempting to understand all this scholarly lingo about LGLL.

At 10:15 I got a thumbs up and good luck text from Alex. It’s fun being able to share all this crazy cellular lingo with him because he actually understands it. When I told him about the polymerase chain reaction test for receptor rearrangement he responded with “YUP. PCR yields a fuck load of stuff.” Oddly enough, I always thought ‘fuck load’ was one word, so I learned two things.

Logan and Christa texted me around 2:00 with a pic of Logan drinking a beer after using his fish bottle opener. What a beer snob he has become and I’m proud of him! Maybe I can turn him to the dark side of wine someday. “Logan, I am your father and you don’t know the power of the dark side. Join me and we will rule the galaxy of alcoholic beverages together!”

Christa shared with me that her dad has just started chemo for metastatic cancer. Holy shit! Any kind of cancer with ‘meta’ in the name is bad news. I hope to hear more from her about his journey soon.

Much later that day...

The WFBH Comprehensive Cancer Center is a concrete and glass, 10 story building dedicated to the treatment, research and development and cure for cancers of all sorts. It's facade is gently curving, sort of like a woman's breast. Maybe that's where the designers got the inspiration since breast cancer is such a pervasive malady among women. I'm not sure how much of the building is dedicated to breast cancer but the entire third floor of the cancer center is dedicated to hematology and oncology.

Upon arrival at the clinic we had to take a number, A222 to be exact. There were patients currently being checked in or out at the 10 check-in/check-out stations, each a small private office where a clerk sat behind a computer taking and giving information. Obviously this place is organized to see as many patients as possible in an efficient manner. It's sort of a cancer care factory. It's also rated as the best cancer care center in NC in some poll; I can't remember which. We didn't have to wait but about 12 minutes before we were called to check in. The programmed announcement came over the speakers.

"Now serving ticket number A222 at station 2."

Apparently it was a day for twos. My heart rate and blood pressure bumped up a bit as MJ and I proceeded to the check-in room.

My first personal encounter was with Melissa Brown, a nice young lady who took all my insurance information and gave me directions for the rest of my visit there. She instructed me to hold onto my A222 in order to insure a place in line for lab work. That's why I was here, right? Right!

The visit to the lab was perfunctory and unremarkable. Right arm, two vials, done. It was a day for twos. Vital signs were next taken by yet another clinician. Yep, blood pressure up alright - 131/80. No terrible but higher than when I went to see Dr. Paschold. Apparently this place is scarier than the Derrick Davis Cancer Center. But only once. Temp normal. Pulse normal. Weight, 8 pounds higher than that morning when I weighed myself naked. Who'd have thought that clothes, shoes, an iPhone and set of keys weighs 8 pounds? Oh wait, it must have been that quad quarter pounder, 3 slices of cheese, a side of bacon with the ultra-sized french fries and bladder-buster sized cup of high fructose corn syrup masquerading as something humanly edible. NOT!

After being taken to an examining room, I was first interviewed and examined by a PA who was being shadowed by a med student. It was a day for twos. She basically took down all my history and previous diagnostic information. Novant health (Dr. P.) had sent over the lab results for the CBC and the flow cytometry but apparently failed to send the PCR test result and description, a vital piece of diagnostic information. I had a copy of the PCR result but it was in the car. WFBH will request it from Novant to complete the collection.

The PA privately briefed Dr. Ellis after my interview so when they all returned to the room where I was waiting Dr. E. was up to speed. In fact, she was way beyond the posted speed limit, meaning her opening monologue answered many of the questions Mari Jo and I had written down. This doc obviously has a lot of experience in this field and was more than happy to share it. She shot straight from the hip and answered all of our questions as if she had invented the disease herself. "I am the goddess of LGLL and lymphocytes bow before me!" Actually, she's probably a hematology goddess and may have written books about blood-borne maladies. I'll have to check with Barnes and Noble or Amazon.com to see if she is published. At this point I knew I had to take back my earlier words to MJ about Dr. E. not having the answers to all our questions. Gladly retracted and with humility!

In her opening monologue she explained that although they did not repeat the flow cytometry test and polymerase chain reaction (PCR) assay, there was no reason to question the original diagnosis of LGLL. Each of those tests represents a vital step in the diagnosis of LGLL with the latter being conclusive. The PCR assay tests for a T-cell receptor gene rearrangement that turns off the cells ability to be killed through apoptosis, a normal cell death process that keeps the numbers in check. When that receptor is rearranged, apoptosis no longer occurs so too many of those lymphocytes are present in a unit of blood.

She further explained that with both LGLL and CLL (chronic lymphocytic leukemia, the other possible diagnosis) treatments would not be offered until I became more symptomatic - recurring infections, anemia, night sweats, swollen lymph nodes, enlarged spleen, etc. At the time I start exhibiting some of those symptoms, those latter two tests would be repeated to confirm the LGLL diagnosis or determine if it is CLL instead. Each of these types of leukemia require specific targeted treatments and she wants those tests done at the WFB clinic when the time comes.

Dr. E. spoke about people living decades after being diagnosed with LGLL or CLL. But, she did not say and we did not ask at what age some of those people had been initially diagnosed with the disease. I did say she was measured, right? I'll raise a glass to living decades longer...but only if the quality of life is awesome!!

The really good news is that this type of cancer doesn't metastasize since the abnormal cells proliferate and move around in your blood stream instead of forming a solid tumor like breast cancer. I didn't ask about the biology behind that assertion and probably wouldn't have understood it.

The other good news is the chance of passing this nasty little lymphocyte orgy on to my children is 0% if it's LGLL and only 10% if it's CLL. Go forth,be fruitful and multiply! It's biblical!

So, the take-away from today's health care adventure is, I still have something bad going on in my blood but there’s not a whole hell of a lot that should be done about it until the treatment is less destructive than the disease. In other words, when the progress of the disease threatens to shorten my life expectancy and treatment has the potential to lengthen it, then treatment will be offered. If and when that time comes, I’ll decide then whether or not I want the treatments. The sword of Damocles may have been stayed somewhat but it swings nonetheless. I think the immediate fear can be dialed back a bit and I can get on with my life. It looks like quarterly blood draws will be part of my future just to keep current on what my crazed lymphocytes are doing. Semi-annual visits with Dr. P. will also punctuate my health-care schedule. This could be a very long blog with long periods between posts.

After my visit today, I pondered the personalities of the two cancer docs I've seen. Dr. Paschold and Dr. Ellis are the yin and yang of blood cancer docs in Winston-Salem. They complement each other perfectly. Dr. Paschold works at a regional for-profit cancer center attached to a large hospital, has experience as a cancer survivor, is warm, affable, witty and folksy. Dr. Ellis, who is a doctor at a teaching and research hematology clinic at a leading medical school, is cool, extremely knowledgeable, measured, thorough and clinical. Dr. P. gave a warm, welcoming handshake and introduced himself to me as Gene Paschold. Dr. E. gave a firm, 'I'm in control' handshake and introduced herself as Doctor Ellis. Get the picture? Dr. P. has two (2) LGLL patients under his care while Dr. E. has 10-12 under her care, a huge difference when you consider the rare nature of this disease.

Before finishing this post, I wrote an email to my kids explaining these recent revelations and included a link to this blog.

Tuesday, July 21, 2015

I stayed up past midnight last night and after waking up at 4:30 to pee, found it difficult to get back to sleep quickly. Lot’s of shit on my brain. I’m dragging ass today due to lack of sleep.

MJ worked late tonight and didn’t get home until around 9:00-ish. Around 10:00 I told her I needed to go to bed in order to catch up on my sleep. She was asking where our LGLL questions were for the doc appointment tomorrow. Apparently she forgot if she edited the file with the questions in Google Docs or Word on the Mac. She became upset that she couldn’t find the document and asked if I had read or seen it. This line of questioning quickly escalated into a shouting match wherein she accused me of not caring about her taking the time to come up with questions and I accused her of not saving/managing her own work. I was ready for bed and after the brief shouting match, got irritated to the point I couldn’t even consider sleeping. I took a shower in Cutter insect repellent and walked out to the upper pond to relax and calm down, in the dark. No candles and the night sky was overcast. Just me in the dark. Caught up on my Words with Friends games and contemplated my navel. I decided then and there that we would have to have some ground rules, the first of which is to not discuss this issue right before bedtime so it won’t be on my brain as I lie in bed pondering the universe and my place in it. I’m fine with discovering my place in the universe but not as a rare LGLL statistic. That’s the kind of shit that creates insomnia and I’m having none of it!

Mari Jo agreed to the ground rule - well, maybe - and off to slumber-land we went, each on our own side of the bed, not touching one another. Sheesh, the emotional strains have already begun. I’d better get back into meditation soon.

Monday, July 20, 2015

Woke up this morning feeling great! Slept until 7:00 a.m. and didn’t even hear the radio come on at 6:00 a.m. Banged out this post and yesterday’s, post-dated, and decided to turn this into some kind of on-line thing.

As I have always done, I walked up all three (3) flights of steps this morning in city hall, two steps at a time, and wasn’t any more winded than I can remember. So maybe my red blood cells are still in good shape and number. Here’s hoping they will not be crowded out too soon by those pesky, deranged lymphocytes. Thank you, God, for lymphocytes but can you dial back on the screwed up DNA a bit?

I need to talk with my HR benefits specialist sometime soon to find out about retirement survivor benefits. MJ and I are thinking it would be far better for her to get long-term compensation than a short-term life insurance pay out. Lots to discover!

Spoke to the NC Retirement system people and found out we have options for death benefit and survivorship. Dinner conversation tonight with my lovely wife.

For some reason I have this nearly uncontrollable desire to tell all my co-workers up here that I have LGLL. When I ponder this desire rationally I come to two conclusions for its source. 1) I want everyone to feel sorry for me and shower me with compassion, or 2) I just want to get it out there so we can all get over it sooner and life can get back to normal…before it becomes abnormal.

Option 1 is unadulterated bullshit. While my emotional self may want sympathy and compassion, my intellectual self doesn’t expect or want anything in the world to change because of what’s happening in my blood. I mean, sure, a little understanding and compassion is nice, but I don’t want everyone to start asking me every day “how are you feeling?” or “can I do anything for you?” “Yeah, if you want to do something for me, buy me a winning lottery ticket when it’s at $500 bazillion so I can give it all away to charities.” Seriously, what the fuck am I gonna do with it? I’d much rather some poor, young schmuck who will live to be 100 get some of it and learn a life lesson of paying it forward. And it sure would be nice to give all my kids and wife a buttload of money each so they could tell the world to fuck off if they wanted to. Alas, I’m just not feeling that in my Kharma so this option can go to hell. Option 2 makes a lot of sense and is clearly a more rational approach so I’ll give it some more thought before implementing.

Just got a call back from Wake Forest Baptist Health and it seems they WILL be doing some blood work to make sure Novant didn’t miss something…or find something they shouldn’t have. “Oh, Mr. Turner, we accidentally mixed your blood work up with someone who just passed away from cancer of the health care delivery system. We’re so sorry you were mis-diagnosed. Have a nice life.” At any rate, this is good news, even if I hear the same bad news.

Now here’s an irony for you. I got a call from the Red Cross asking me to schedule a blood donation. “Sure, I’ve got lymphocytes to spare. Call all your friends!” But, I didn’t really say that. I told them that I was recently diagnosed with something that should exclude me from donating any more blood for the time being. But I did tell the lady I may get some of that blood I’ve given back. Transfusions in my future? Highly likely.

Sunday, July 19, 2015

Today was an ‘anxious’ day. The anxiety was from the impending call to my kids to inform them of my diagnosis. I stayed busy so the time went by pretty quickly. Wait, is that a good thing?

Three o’clock rolled around and we all had called in to a conference call number that Mari Jo had provided. Much easier and straight-forward than me trying to add calls ad-infinitum on my iPhone.

When MJ and I dialed in Blake, Alex and Hayley were already on. It is uncanny how alike Logan and Alex sound on the phone. Hayley had just said that when I called Alex Logan. Jeez!! Logan and Christa joined us in a couple more minutes. I’m so glad Logan had Christa with him. I could tell he was really struggling with the news and having Christa there as emotional support was helpful, I’m sure. I told Hayley she could get emotional support from some of her camp buddies if she needed it. They don’t run in mema’s social circles so the news getting out to her would be very unlikely.

I explained everything I knew about my LGLL diagnosis to the kids and opened it up for questions. I attempted to keep things positive and upbeat but this kind of news is never very positive when you’re hearing it about a loved one. The silence spoke volumes and the nervous questions even more. I couldn’t answer all the questions but promised to get answers when I could.

Blake responds to out-of-control events that hurt loved ones like I do – in anger. I’m not sure who asked the question that prompted his response but it was something like, “It’s cancer! It fucking kills you!” That sounds just like me and the best comparison I can think of was when Hayley fell in the fire at Hanging Rock Park. It was out-of-control for me and I couldn’t prevent it so I responded in anger. Andrea calmly took Hayley down to the little hospital in Danbury while I swore, cursed and threw (literally threw) all the camping shit into the back of the Pathfinder. (Alex can confirm that story! I think we had Peter Simms with us too.) That’s not an unusual reaction for a guy a guess – it’s kind of a macho thing, like, I should be able to control/fix everything. Despite the inappropriate initial reaction, I think Blake and I finally get around to being constructive and supportive. I can deal, (probably Blake too) with being hurt myself better than someone I love being hurt. “It’s just a flesh wound!” Hahahahahahaha!!

I explained to all the kids that they shouldn’t spread the news outside the current circle of knowledge; they shouldn’t even tell their moms yet, which was difficult but I just don’t want the news to get back to mom until MJ and I are there to support her. Don’t want a well-meant but inappropriate FaceBook post to be an unintended source of anxiety for mom. They all agreed to keep our secret for now.

When the call was over I felt better. It was somehow cathartic. I hate giving news to my kids that causes them to hurt or brings them uncertainty about the future. We also told Brenda, our house guest, and Ellen, my daughter-in-law. The circle is bigger than I wanted so we plan on driving down to mom’s this weekend to break the news. That’s gonna really suck!!

On the really bright side, we made home-made peach ice cream and Ellen stayed to have dinner with us. She and MJ had gone to get a mani-pedi together. I’m sure that was a somewhat emotional trip.

Friday, July 17, 2015

I made a ‘second opinion’ appointment at WFBH Hematology and Oncology yesterday. The time is for next Wednesday, July 22 at 3:00. After thinking about it last night, I called them back today to ask just what a ‘second opinion’ involves. That is, if they are simply going to use the same pathology report that was prepared by the lab that analyzed my blood from the Novant Health group, then what’s the use? Apparently, this disease is so rare it would be hard to misdiagnose, I think. I suppose what I was expecting was another blood draw with an analysis and pathology report from their own lab. That’s a real second opinion to me. To simply review the existing pathology report from Novant and then confirm the diagnosis is kind of dumb to me.

I called WFBH back this morning to verify exactly what was going to happen. The lady I spoke with said she wasn’t sure but would send an email to Dr. Ellis and ask. Splendid idea! Hopefully I will hear something back before the appointment on Wednesday so I can cancel if it’s unnecessary. On the other hand, it might be helpful just to hear another doc’s opinion on my condition and ask some more probing questions. We’ll see.

Currently I’m trying to set up a time this weekend to tell all my kids. That will make it real!! It’s kind of scary thinking about it but they need to know in case something suddenly turns worse…or better!! I would rather deliver bad news initially then follow it up with good news later than the other way around. At any rate, it looks like it will be sometime Sunday when I make the call.

While I was running/walking yesterday it occurred to me that my stamina may suffer from LGLL as it progresses. As the lymphocytes crowd out more of the oxygen carrying red blood cells I can see that I would have less stamina and get tired quicker. That’s where the anemia symptom comes in. Less RBCs means less hemoglobin, which is what actually has the oxygen carrying protein attached to it. In sports medicine lingo, my VO2Max will diminish. That’s actually somewhat ironic since I spent so much time last year training to improve it. All that high intensity interval training may ultimately be for naught. But, no one can ever take away my sub 25 minute 5K race that I ran last year at Beat the Heat!! So far, that’s my personal best but I’m going to try like hell to place in that race before I can’t run anymore. On my bucket list!!

I was finally able to nail down a time to talk with all four kids simultaneously. It will be Sunday at 3:00 pm. I think when everything is fully explained to them about the disease and life expectancy they will be okay. I want them to be okay, but I want them to know. This circle of life rolls on and on and we rarely know when it will stop for us. I have four incredible children who will carry on the circle of life for me.

Tonight, Mari Jo and I discussed telling my brother and we decided it was a good idea. We wanted to get his reaction as to whether or not we should tell mom. We decided to call him and inform him of my diagnosis. He took it in perfect stoic stride, I wouldn’t have expected anything different. Certainly not “Holy fucking shit Bro – that’s awful!” or “I can’t believe that! Not you!”, not even “I’m sorry Bro!” He’s not the emotional one, he’s the thinker. His best attempt at disbelief or compassion was “Well, Bro that’s not the best news I’ve heard today.” When you hear shitty news about someone you love, your fucking brain locks up and more often than not, the most encouraging things do not come out. It must take the Hospice workers years of training and experience to short-circuit that automatic brain shut down.

Don’t get me wrong, I love my brother and this kind of thing makes me wish the distance between us hadn’t grown over the past 3-4 years. We don’t talk on the phone like we used to, we don’t visit like we used to, and on the rare occasion when we do, we don’t crack jokes and tell pointless puns like we used to. I always thought that he would outlive me and unless he does something bizarre in the next ten years, it will be a reality. I’m fine with that. Really I am.

Thursday, July 16, 2015

I’ve always said that I like unique things. Well, I have something unique & rare that only affects about 1000 people in the US every year. I was handed a diagnosis yesterday at Gene Pashold’s office of large granular lymphocyte leukemia. It’s a killer but it takes its sweet time. Looks like this could be a long journal! He stated that I’m only 1 of 2 patients of his with this form of cancer and that most people can easily live 10 more years. Ten more years…ten more years. Let that sink in.

I took it all in stride for the most part. I had no preconceived ideas of what it could possibly be going in there but assumed it was something that wouldn’t kill me within 6 months or else I would have heard back from them. “Get your bucket list prepared!!” I’ll still prepare a bucket list but it can be more sublime now that I have a long term horizon with which to work. ‘Long term’?? WTF? My dad lived until he was 98 and he had a brother that lived until he was 102. They both had all their faculties up until the last few weeks. That’s not my story it seems. That’s OK, I always thought my brother Joe would be the one to have the longest life. Jeez, that would be a real kick in the ass if he and I both died before mom does. She is in pretty good health at 88. Go mom!!!

My beautiful wife and I went to dinner last night and started getting comfortable with the idea of me exiting the picture in 10 years. Lots of questions and work to do on the bucket list. I’ll make my bucket list the last page of this journal, sort of an appendix, pun intended. We talked about having a living wake where we would just have this huge raucous party while I’m still feeling good in lieu of a dead person wake, which is far more morbid and boring. Who wants to come look at a dead person for God’s sake? I’m not Irish so I can have whatever kind of wake I want! Right? Maybe if I’m still feeling decent and it’s 6 months from death we can have that living wake. We use anything as an excuse to throw a party!!

I’m planning to call WF Baptist Health to see about getting a second opinion. That’s on my immediate to-do list this morning. I wonder if they’ll need a referral from a doc or will simply allow me to show up with my current diagnosis and high lymphocyte count. By the way, they didn’t draw blood yesterday so I don’t know what the count is now. Gene said some people have counts as high as 100,000 and still live a while. According to Gene, it’s my T-cells that are afflicted, produced in my thymus glands, wherever they are. (Google search!!)

Gene put me on a quarterly blood draw schedule to recheck my counts and semi-annual visit schedule with him…until things get crazy. I’ve got a ton of questions like:

Does the long-term LGLL progress to acute LGLL as the counts get more out of whack? (Edit: No, LGLL is, by definition, a chronic, slow-growing leukemia.) How long does that take? When during the progress of the disease do you start feeling really crappy? When do treatments begin? How effective are treatments? What are the treatments? Should I tell my kids about it? Should I tell my brother? I sure as hell am NOT going to tell my mom. I’m actually thinking of calling Joe this morning to discuss. Don’t want to jump to any conclusions but then you never really know how long before things start getting ugly.

Gene suggested that if I start having unexplained night sweats, swollen lymph nodes and anemia, things have progressed to the treatment stage. I had read similar symptoms on a website. Apparently what happens is that all those pesky, out-of-control lymphs start crowding out other equally important stuff in a unit of blood and that can cause the anemia and lead to possible recurring infections. Something to look forward to!